Hi, All day today I was wondering; Am I now on xalkori as maintenance? I am stage 4 and have been NED from the neck down since june 2010. I have been dealing with brain mets since july 2011. I just had a clean scan for the brain and chest. Since I am technically NED am I building up a resistance w/o actually having any visible tumors? Is there anybody else on xalkori who is NED? Maybe not actually having any tumors I can stay on xalkori longer than the stats. Is xalkori approved for maintenace? Of course if any brain tumors pop up I will have them zapped. Thanks, Sean

Hi Sean. Welcome. Grace has just transferred it’s entire site to a new home and we’re all learning how to navigate here, and bugs are being addressed during this roll out period. I’m sure the faculty will be along soon to answer your question. Meanwhile, I just wanted to say congratulations on being NED! We love hearing that! The doctor’s will be along soon to reply to your question. Debra

Agents like XALKORI (crizotinib) are meant to be taken in the setting of known advanced disease and then until the time of progression. You can say that it’s leading to the potential development of progression, but it’s also almost certainly actively suppressing the disease. While it may be possible to stop an agent like XALKORI or an EGFR inhibitor like Tarceva (erlotinib) or Iressa (gefitinib) after someone has achieved their best response, that isn’t how they have been studied, and there isn’t a lot of enthusiasm for stopping a treatment that is almost certainly the reason that the person is doing so well. There is even evidence that some people experience a rapid progression of their disease as a “rebound” effect after stopping the targeted therapy that has been very effective.

Please note that we’re not going to keep this generic “ASK US” section, since that’s pretty much a no-man’s land for the forums, and instead will ask people to identify the most appropriate subject for their question.